Symptom Tracker

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I was reading a news article about the American College of Rheumatology and how they are recommending much more aggressive treatment plans during the early stages of RA. Of course, it got me to thinking… 😉

Wow~ Its hard to believe that it has already almost been 5 years since my severe RA diagnosis (August 2007)! And almost 4 years since my Lupus diagnosis (Fall 2008). I was literally diagnosed right from the get-go with SEVERE Rheumatoid Arthritis. I recall my Rheumatologist telling me, this is NOT something that happens overnight. This happens over the course of years. So why then..despite having physicals every year, wasn’t the RA questioned earlier on BEFORE it got to the Severe Stage???

I had complained on pains to my Physicians for years and years and it fell on deaf ears. WHY wasn’t I tested for RA sooner? If I had been, the damages I am seeing currently, could have possibly been reversed before they caused permanent deformities. This is WHY the American College of Rheumatology is recommending treating RA much more aggressively in it’s earliest stages. So it can be reversed! By the time, I was diagnosed, it was already too late- it was in severe stages.

I personally would like to see more Physician education on how to recognize the early stages of RA and other Autoimmune Diseases. This education is especially needed among Primary Care Physicians who write out referrals to the Rheumatic Specialists. They need to listen to their patients and test for these types of diseases much, much sooner than they do currently.

At this time, back in 2007, I could barely walk because I was so crippled from these diseases. It was too painful to even wash my own hair because the pain was so bad that I could not even lift up my own arm.

I have had many nights where NOTHING, not even prescription pain medication would even touch the pain. It did not even lessen it. Sometimes that would go on for weeks or months without any relief, especially during the winter months or in bad weather.

Here we are 5 years later and although I am showing signs of major damage done by the RA, I am once again able to walk for the most part and able to do most things I was no longer able to do in 2007. However, I have severe damages done by the RA at the same time.

Now I STILL get issues and there are some stuff that I do still have difficulty doing from time to time. My left hand in particular has 2 of the knuckles that have literally been eaten away half way across by the disease. This damage was found via x-ray. My back is one hot mess back there- uggghhhh

I just had to have my boyfriend replace the doorknob in the bathroom to a lever one vs a knob because I was having too much difficulty turning the knob and was getting trapped in my own bathroom and couldn’t get out again. Darn “RA PROBLEMS” lol. Some of the crazy stuff that happens to us, you seriously have to find some sort of humor in because otherwise, I think we would cry.

I think its great that the ACR is recommending much more aggressive treatment plans earlier on in diagnosis. It may be too late for me, for MY RA, because my damages have already begun to take place… but it might possibly prevent these same damages from happening to future patients. And that’s a good thing. No one should have to be permanently disfigured by this disease. The earlier they catch the disease and begin to treat it , it has a greater chance of being reversed. Now let’s hope that more Physician Education into the earlier stages of RA is also a priority as well. The sooner the disease gets diagnosed and on treatment plans, the better the eventual outcome.

Wow..its hard to believe it is already November! Thanksgiving is just around the corner. While we should always remember to be thankful for the things in life that we do have, traditionally this is the time of year where we tend to think upon it so much more.

Sometimes that is easier said than done, especially in tough, economic times. Money is tight, worries about how you will pay your bills, whether or not we’ll have a job tomorrow, and so many other things.. Chronic illnesses compound these feelings of woe. It is essential for our own well-being to try to turn these negatives into positives to the best of our own abilities.

Sometimes being thankful for the little things in life can be a stepping stone to a happier you. It is tough enough to always be sick all the time, but we can chose on how we deal with it. Regardless of what we decide, we are at the mercy of whatever course our diseases take. We can either be miserable or we can accept what we cannot change, make the best of a bad situation and try to live through it as happy as we can.

Stress (and feelings of misery/depression) feed fuel to our illnesses. Why feed our Monsters any more than necessary? No one is happy about being chronically ill, that’s a fact. No one expects you to be. It stinks actually, so we must think to ourselves– how do we take a stinky situation and make it smell a lil bit more like roses? What is it that does make us truly feel happy? And try to bring forth more of that into our lives to help brighten up even our darkest days.

Sometimes we need to take the time to reflect on whatever good things life does throw our way. Be thankful we have those and to try not to dwell so much on the bad things. Life is full of beautiful and wonderful adventures and experiences. Sometimes we just have to look a little harder or deeper to find them and enjoy what we do have.

Sometimes when we have not been feeling well for long lengths of time, we can not help but to start feeling sorry for ourselves. We are human after all, and it is very hard to NOT miss the lives that we used to live before we got sick.

Many days I have pondered on what used to be, what I used to be able to do, the fun I used to have..back before I got sick. Boy, I sure can be a depressing soul when I want to be! I can be my own worst enemy.

Then one day, I realized that I needed to stop doing this to myself! Life can always become much worse than it is, so count my blessings for the things that I do have. The most fortunate of these blessings is that I am STILL HERE to tell the tale of my illnesses and how they have effected me.

I honestly believe that God sends people into our lives at the times when we need them the most, guardian angels here on earth..to help pull ourselves out of the darkness and into the light. My Grandmother used to tell me “Everything in life happens for a reason, even if we dont know the reason why..”

A few weeks ago, my good friend, Walter Fleury, celebrated the 27th Anniversary of a fatal car accident in which he was one of two survivors in an accident that killed several other people. Since that fateful day in 1984, Walter has had to live his life in a wheelchair, paralyzed from the waist down with a spinal cord injury. From that point forward, his life was permanently changed.

I graduated from high school with Walter and over time, we lost touch until about a year or so ago when we reconnected on facebook. I have learned many lessons from Walter on forgiveness and caring. I look at Walter, who has lost way more than I have..and he is always smiling, happy and ready to give of himself and to help in any way he can. An inspirational person to have in my life. It makes you stop and think- what do I really have to complain about in comparison.

Somewhere along the line, I learned to turn this huge negative in my life (Lupus and RA) into something positive, or at least I hope so anyhow. Hopefully, I am paying it forward with love, kindness and compassion as has been given to me. I learned that by helping others, it helps myself.

There is also the hope that somewhere, somehow.. someone will read my posts and inspire them to go into Medical Research and perhaps be the one to discover the cures for these diseases. You just never know how your life may touch anothers somewhere along the line …but there is always hope that somehow your life can and will make a difference. 😉

~Who knows what miracles you can achieve..when you believe…~ – Mariah Carey/Whitney Houston,
“When you Believe”, Prince of Egypt soundtrack

First and foremost I want to send my sister, Karen one giant long distance hug {{{{{{{{{{Karen}}}}}}}}}}}}. She just found out that she was diagnosed with the Autoimmune disease, Hyperthyroidism.

It wasn’t all that long ago that I was in those same shoes learning that I was being diagnosed with a chronic disease. Its a very scary place to be~ not knowing what to expect, reading the statistics, coping in a world where no one understands what you are going through.

Just know YOU ARE NOT ALONE! There are millions of others out there worldwide who also suffer with this condition. They are your best support system because they understand everything that you are going through. I find out more information in talking with the other patients out there than I do my own doctors.

Autoimmune Diseases, in general, tend to run in families in the form of disease clusters. Meaning that where one sister (Me) has Lupus & RA and another family member (Karen) has one or more of the other 100+ AI diseases out there , which in her case is Hyperthyroidism. Sadly Karen, we just became a statistic, sorry to say…

What is Hyperthyroidism?

The Thyroid is what controls our metabolism, which ultimately effects how much we weigh, how many calories we burn, regulates our body temperatures (hot/cold) etc…

In Hyperthyroidism, the thyroid is overactive and producing too many hormones so it can also effect vital organs like the heart, causing an increased heart rate. Pretty much every cell is effected when there is too much of the thyroid hormones being released into the body. Think of the thyroid as the control center telling all of these things what to do, when it gets too little or too much of the thyroid hormones, chaos ensues.

While there are many causes for Hyperthyroidism, one of the most common is Graves Disease, which is when the thyroid becomes enlarged. But there are also other causes for it too (Ex a nodule growing inside the thyroid, inflammation of the thyroid gland, etc). Graves Disease happens when antibodies are created by the immune system attacking the thyroid. It is these antibodies that cause the thyroid to produce too much hormone.

Karen~ I am so sorry to have to joining me into this world of Autoimmunity. I wouldn’t have wished it on anyone, not even my worst enemy. While our diseases may be different, there may be many commonalities that we can both relate to one another with. I will be here for you whenever you need me to be xxooxx ❤

Love you and I hope that your medications help you to feel better very soon. I am not only your sister, but your friend too. You can never have too many friends

Today’s 3 month follow-up visit with the Rheumatologist turned out to be eventful for once, thanks to the presence of a Student Doctor. Finally got the actual Doctor to somewhat listen and pay attention to the Lupus part of my diagnosis, question stuff and actually look at my medical history (which in my opinion should have been done when he picked up my case initially!) Woot! THANK YOU STUDENT DOCTOR!

I do apologize to the other patients for bumping their appointments back by an hour and a half though. Sorry my bad..but sadly, it was the consequence of my Lupus part of the diagnosis being ignored for the past year or so. It is my right as a patient to be listened to. Also in my opinion, by not having it paid attention to, it causes some serious concern in the quality of care and quality of life. The Big Bad Wolf does not like to be ignored and neither do I.

We, the patients have to be our own best Advocates and do anything in our power to insure that our needs are being addressed and paid attention to.

Part of the reason for Student Doctors is so that they can learn on actual patients so when they are off on their own some day, they’ll know what to do. Well, lets just say I used the opportunity to have my say on what NOT to do too.

One of the basic things doctors need to realize is that they need to LISTEN to what their patients are telling them and not ignore or blow off what we were are saying. Listening is so important and helps build and strengthen the doctor-patient relationship. Otherwise, we stop discussing things with them if we feel our concerns are going on deaf ears. Why bother?

Basically, after my last visit in May, I was left to feel like I was on my own as far as anything “non-joint related” was concerned. As a patient, that makes me very angry because to me it comes across as “I dont matter”. I am telling him “This is what happened”..why cut me off when I am speaking..and why not pay attention to it?? This is valuable information in the treatment of MY care.

The appointment starts off with the Student Doctor coming in first, all by herself. She asks me a series of questions that I answered honestly and openly. I mentioned to her how last visit back in May, I was just coming off the worst flare I have had to date other than when I nearly died in 2007. I had told my Doctor at the time about it and how badly I was having memory issues, brain fog, etc and his response was “Sorry not Joint Related” and did not pay attention to a word I said. Just blew it off. WTF?!

This is when I mentioned how my previous Rheumatologist before my current one, diagnosed and treated me for Lupus as well as RA. And as you know, Lupus is SYSTEMIC, meaning it can effect any and all systems of the body, not just the joints.

I continued to tell her how current Rheumy appears to not pay attention to anything I mention unless it is RA related, as if that is all he seems to want to treat me for. He even went so far as to send a note to my house where the first line read ” Patient seems to think she has Lupus…”

Ummm hello what??!!! First off, I dont THINK I have Lupus, I was actually told that by the Rheumatologist who treated me before you. If you read my chart, you would know that. I am sure a copy of the letter he wrote me must be in my chart.

The Student Doctor eventually left the room and came back in with my Rheumatologist. We discussed a lot of what I mentioned to the student and argued a bit pertaining to the previous visit in May. He did his exam with the student present (making sure he was addressing a few of the issues I had mentioned that were ignored last time, which of course arent doing what they were then..now).

He paid attention to my inflammation on my left hand more today than last time too, considering it was present for both visits. He recommended that I should consider a Cortisone shot for it, even though it is not currently causing me pain at all. He is concerned that it will eventually damage the joint.

Rheumy then decides to take the Student Doctor, myself and Joe into his office and physically access the computer database of my medical history looking for WHERE or WHY my previous Rheumatologist would determine I had Lupus via the labwork. He did find where he ran various ANA tests and Lupus Panels but apparently they were all ok. I told him to the best of my knowledge I have never tested positive for ANA but I was under the impression that my diagnosis was based on meeting the criteria needed for the diagnosis.

Basically what is happening now is he has given the Student Doctor a research project to understand how, when and why I was previously diagnosed with Lupus. He still doesnt believe I have it and wants to either prove to himself via existing records that yes, I do have Lupus or to prove to me without doubt that no I do not have Lupus. Of course, he then made a comment to the Student that it is not uncommon for Doctors to have varying opinions that do not always come to the same conclusion.

He also ordered another Lupus Panel as well as ANA testing for my upcoming labwork for my next visit with him in 3 months. He commented to the Student that they should run these occasionally because “they can come back to bite you in the ass if they do not”..possibly making a dig at me for embarrassing him in front of a peer for not addressing this previously when I have been telling him this stuff all along. Too bad, Doctor. You should have listened to me from the get-go and none of this would have happened.

In addition to the labwork, I also was sent to Radiology to address the back pains I have also been complaining about. Apparently, according to him these cannot be due to RA so it has to be something else. They took about 10 films of my back in various positions as well as 1 film of my left hand to see what is going on there too.

All in all, as taxing as this doctor’s appointment was today, I am happy to FINALLY be getting the Lupus part of my diagnosis addressed once and for all. Its a shame that it took a Medical Student to do it, but I am happy she was there. Thank you Student Doctor. I am sure my Rheumatologist is probably none too happy with me at the moment, but at the same time, as a patient I have the right to be treated with respect and my complaints listened to and addressed. It is not fair to me to have a good chunk of my ailments ignored.

Not sure how things will end up, but time will tell.. perhaps my Rheumatologist will start listening to me more vs ignoring what I have to say. I know what is happening with my body. I am his best source of information and I need to be listened to.

Thank you to Patti Casciano for posting this song on her Facebook Wall today, it’s probably the perfect song to use xxooxx ❤

Earlier today, I was talking on facebook about blood donation and how I was a huge supporter of the American Red Cross and Music saves Lives. Now I know why it was on my mind. My body was remembering my traumatic ER visit at a subconscious level! My anniversary date of the event is only a few days away.

Both of you ganged up on me and tried to take me out on August 14th, 2007 but HA! You DID NOT succeed! I am still here to tell the tale! I may be small and appear to be an easy target, but guess what? I am tougher and stronger than you thought! HA!

You turned my own body against itself, caused me to nearly bleed to death requiring 3 blood transfusions, made me pass out at work, drop down to 86 pounds, etc. You know it really isnt nice to scare the crap out of my boss like that. He told me my lips went blue, my eyes were completely sunken in as well as encased in deep, dark red circles. [tsk tsk bad, bad Monsters!]

I would not be here today if it was not for the kindness and generosity of those individuals who donated blood in the summer of 2007.

My bloodcell count that day was a “2”, its supposed to be a “12”. I was in such sad, pathetic shape that my health insurance told me that I was rated at the highest level of urgency. Which of course explained why for the 1st time ever I was not only in a bed, but was off having tests within minutes of walking into the ER. No lines, no waiting…I went literally right in. Even for the tests, no sooner was I done one, they would get me back to my bed and whisk me off to the next one within a matter of minutes.

According the American Red Cross~ 500, 000 blood donors are needed just in the month of August alone. Here is the link to their website for more information on blood donation or to see if there are any upcoming blood drives in your area http://www.redcrossblood.org/ .

According to the Music Saves Lives webpage, 9,465,189 people have needed blood donations since Jan 1, 2011. And that number is still climbing. Here is the link to their website http://www.musicsaveslives.org/about.php .

While I am unable to donate blood because of my medications and the Lupus, I do occasionally try to remind people how important it is to donate blood if/when they can. I know in my heart, I would be dead if it was not for the 3 blood transfusions I had that day. So I am paying it forward in the only way I can. Encouraging others to donate blood to save lives, just like they did for me in 2007.

As for you Wolfie and Gargoyle —> I will continue to kick both of your asses and will survive 😉 So give it up already. I refuse to let you win.

Music <–Truly one of life’s blessings when it comes to making people feel better. God bless Youtube! Best invention ever when it comes to helping chronically ill people like myself to feel better. Of course, YouTube would be nothing if it was not for the talented artists who share their music with the world. Thank you, from the bottom of my heart.

No matter what my mood is, I can always find some song out there to help me feel better. Music has the ability to evoke feelings that help cleanse away whatever troubles are building up deep down in the sub-conscience. While it wont take away the realities of having two major illnesses nor the aches and pains that those diseases inflict upon me, it does have a way of changing my mood and attitude into a better and more positive one.

Music is in my blood. My father was a drummer for many years while I was growing up. Although I have no natural musical talents of my own, I think the rhythms and beats must pump through my veins, giving me life just the same.

I have the ability to get completely lost in a song where I have no perception of anything going on around me. The walls could probably crash in around me and I wouldn’t have a clue. I am in my own little world 🙂

I will listen to some songs over and over again. Especially if I am in a sad mood. However long it takes to get me to cry and get it out of my system. Once those sad feelings are released, I feel tons better- like a huge weight was lifted off my shoulders.

My neighbors probably hate my gutts when I get into some songs. I make a pretend microphone with my fist and sing my heart out (just not well, I am afraid). My animals like my singing though. I sing to them all the time LOL Poor things, they must be tone-deaf 😉 My shorkie, Hope, likes when I dance and sing to her.

Music is a great escape from the realities of our life, even if just for a little while. Sometimes we need a break from all of life’s problems. So next time you arent feeling well, try listening and getting lost in some music…it might do wonders for you.

Until next time…Dont stop thinkin’ about Tomorrow . It WILL get better, tomorrow is a new day